Monday, June 28, 2010

Lest you think I only initiate letter writing when I’m angry, upset or frustrated, I want to share with you a letter that I wrote and sent to another of my mother’s doctors three weeks ago. Ironically, it was Dr. It’s-All-About-the-Tumors who requested Dr. A-Person-is-More-Than-a-Pair-of-Kidneys as a consultant. Go figure…

On behalf of my family, I’m writing to tell you how much we all appreciated the competent, compassionate care you provided to my mother (and to the rest of us) during her hospitalization this spring.

From the minute you came out from behind the nurses’ desk on 4 North to give me a hug as I accompanied my mother from the emergency room late on that Saturday night in April, I knew that we were in good hands. Your concern for her well being as a complete person – not merely as a set of kidneys or a series of lab results – and your consistent, continual presence and willingness to speak often and openly with us about her condition all were greatly appreciated.

In the end, however, her disease and the pain it caused were too far gone to respond to treatment, and following 11 days in hospice, my mom passed away peacefully and pain-free at the end of May. Nonetheless, we always will remember most fondly your gentle, caring ways, and will be ever grateful that our paths crossed during this difficult time in the life of our family.

Sunday, June 27, 2010

I'm pleased to report that earlier today, my sister placed the following signed letter in a mailbox near my parents' house and it will go out in tomorrow's mail. If we're lucky, it will force Dr. It's-All-About-the-Tumors to pause. If we're really lucky, he'll rethink some of his ways and maybe, just maybe, make some positive changes to ease the path of other families whose loved ones are under his care. (Earlier versions of this letter can be found here and here.)

Here's hoping...

JANETHEWRITER AND HER FAMILYOur Childhood HomeSuburban, New Jersey 08873

June 28, 2010

It’s-All-About-the-Tumors, M.D.Whoop-de-Doo Oncology Practice205 Main Drag through College Part of TownSuburban, New Jersey 08901

Dear Dr. It’s-All-About-the-Tumors:

We are writing to inform you that DianatheWriter passed away peacefully and apparently in no pain over Memorial Day weekend after 11 days in hospice. As you may be aware, a number of years ago, when she heard you speak, she was so impressed by your commitment to quality of life for terminally ill patients and their families that when she came to have need of an oncologist herself, you were her first and only choice. And, although we cannot begin to comprehend the virulence of her disease or the speed with which it ravaged her body, the long weeks that led to this sad outcome did give us ample reminders of some of life’s most important lessons. We have chosen to share a few of these with you now in the hope that you will make a stronger commitment to provide compassionate care to family members of these very same terminally ill patients.

We are fortunate to be a strong and loving family whose members care deeply about each other, especially when one of us is ill. As such, we repeatedly sought out honest, realistic, forthright, and regularly forthcoming assessments about DianatheWriter’s illness, especially at critical junctures in the treatment process. Sadly, it was difficult to obtain such assessments from you, and even when we did, they were, with rare exceptions, conveyed by telephone only. Never were we afforded an opportunity to sit with you face-to-face to hear your thoughts and garner your insights.

We learned that nurses and social workers often are the best conduits of information from physicians, but only when these professionals can read doctors’ handwriting. Sadly, on numerous occasions, they were unable to read yours, leaving us without up-to-date information and—perhaps more important—opening the door to the very real possibility that patient treatment and care, DianatheWriter’s or others’, might be compromised.

Through the kind words and gestures of most of DianatheWriter’s physicians and caregivers, we were reminded about the value of dignity and respect for all people, but most especially for those whose lives are drawing to a close. We were reminded, too, about compassion and kindness and how crucial they are to those of us walking a path of loss. When you called to recommend hospice and inform us that your office would make all the necessary arrangements, how consoled we might have been had you offered us a few brief words of comfort, of sympathy, of support. Sadly, they were glaringly absent.

Henceforth, we will carry these lessons in our hearts as a lasting tribute to DianatheWriter and her well lived life. It is our hope that as you continue to deal with the families of terminally ill patients, you, too, will carry these lessons in your heart and, more important, will make them the work of your hands.

Monday, June 21, 2010

Last week on Facebook, I pondered this question: JanetheWriter wonders when she'll regain enough patience and concentration to read again. Of course, I’d like to be able to dig into some of the many “to read” books that I wrote about here and here, but that doesn’t seem as though it will happen anytime soon.

In the months since some of those books joined the many others on my shelves, life has taken some unexpected twists and turns and a whole new collection of books is taking shape in my home, brought to me through the thoughtful generosity of friends, following my mother’s death.

The third -- Leon Wieseltier’s Kaddish, which according to the dust jacket, is “a record of the inner life of one of America’s most brilliant intellectuals during a year of mourning” – was lent to me by a friend when we had lunch last week. Thumbing through its nearly 600 pages, I found small, dense print, limited white space, and seemingly endless paragraphs on which my eyes cannot yet focus. Perhaps I’ll pick it up in a few weeks…

In contrast, each page in Earl Grollman’s slim volume -- Living When a Loved One Has Died, recommended by another friend -- is mostly white and dotted with just a few printed words or a poignant black and white photograph. Some of his words, I am convinced, were written just for me at this very moment:

The Many Faces of Grief

Your grief is not only frighteningbut erratic.

Even though each of us facesa death in different ways,we share some points of reference.

Friday, June 18, 2010

Thanks to all of you for your comments about my original letter to Dr. It’s-All-About-the-Tumors. Your feedback is much appreciated.

Although some readers indicated that the letter was well-written and should to be sent, others suggested that adding specific details and examples might be beneficial. Still others noted that in its poetry and subtlety, the letter’s message might be lost. Synthesizing all this commentary and adding the essence of my father’s note that “[He] should not be wimpy by giving [me] the responsibility of sending it…[and that] we can all sign it individually or as a family,” I've revised the letter as follows:

Dear Dr. It’s-All-About-the-Tumors,

We are writing to inform you that DianatheWriter passed away peacefully and in no pain over Memorial Day weekend after 11 days in hospice. As you may be aware, a number of years ago, when she heard you speak, she was so impressed by your commitment to quality of life for terminally ill patients that when she came to have need of an oncologist herself, you were her first and only choice. And, although we cannot begin to comprehend the virulence of her disease or the speed with which it ravaged her body and spirit, the long weeks that led to this sad outcome did give us ample reminders of some of life’s most important lessons. We have chosen to share a few of these with you now in the hope that you will, in her memory, make an equally strong commitment to provide compassionate care to family members of these very same terminally ill patients.

First and foremost, we were reminded that people are sacred beings, not merely collections of body parts, and certainly more than the tumors and lesions that indiscriminately assault the physical vessels that house their essence and spirit. May you always possess the necessary wisdom, time, and compassion to see your patients (and their loved ones) in this important way.

We also were reminded that we’re lucky to be part of a strong and loving family whose members care deeply about each other, especially when one of us is ill. As such, we repeatedly sought out honest, realistic, forthright, and regularly forthcoming assessments about DianatheWriter’s illness, especially at critical junctures in the treatment process. Sadly, it was difficult to obtain such assessments from you, and even when we did, they were conveyed by telephone only. Never were we afforded an opportunity to sit with you face-to-face (and thus have access to your body language and facial expressions) to hear your thoughts and garner your insights.

We learned that nurses and social workers often are the best conduits of information from physicians, but only when these professionals can read doctors’ handwriting. Sadly, on numerous occasions, they were unable to read yours, leaving us without up-to-date information and—perhaps more important—opening the door to the very real possibility of compromised patient treatment and care.

Through the kind words and gestures of most of DianatheWriter’s physicians and caregivers, we were reminded about the value of dignity and respect for all people, but most especially for those whose lives are drawing to a close. We were reminded, too, about compassion and kindness and how crucial they are to those of us walking a path of loss. When you called to recommend hospice and inform us that your office would make all the necessary arrangements, how consoled we might have been had you offered us a few brief words of comfort, of sympathy, of support. Sadly, they were glaringly absent.

Henceforth, we will carry these lessons in our hearts as a lasting tribute to DianatheWriter and her well lived life. It is our hope that as you continue to deal with the families of terminally ill patients, you, too, will carry these lessons in your heart and, more important, will make them the work of your hands.

Tuesday, June 15, 2010

You may recall that last fall, I was prompted to write (but did not send) a letter to my internist. Instead, I posted it here.

Once again, I’ve been irritated enough to write a similar (and yet a different) letter, this time to one of my mother’s doctors. And once again, I’m unsure about whether or not to send it.

So, please do me a favor: read the letter yourself and let me know what you think by sending an email or leaving a comment at the bottom of this post. Thanks.

Dear Dr. It’s-All-About-the-Tumors,

I am writing to inform you that my mother, whom you treated in the hospital for most of this spring, passed away peacefully and in no pain over Memorial Day weekend after 11 days in hospice. For my father, my sister and me, the long weeks that led to this sad outcome were fraught with reminders of some of life’s most important lessons, a few of which we would like to share with you.

First and foremost, we were reminded that people are sacred beings, not merely collections of body parts, and certainly more than the tumors and lesions that indiscriminately assault the physical vessels in which their essence and spirit dwell.

We also were reminded that if they’re lucky, individuals have family members who are of paramount importance to them, particularly when the individuals are ill. As such, family members deserve honest, realistic, forthright, and regularly forthcoming assessments about their loved one’s illness, especially at critical junctures in the treatment process. Body language and facial expressions, neither of which is visible when communicating information over the phone, are essential elements in such conveyances.

We learned that nurses and social workers often are the best conduits of information from physicians. The legibility of physicians’ handwriting, therefore, is imperative, not only to ensure accurate transmission of details to families, but also (and perhaps most important) to guarantee that patient treatment and care are never, ever compromised.

Through the kind words and gestures of most but not all of my mother’s physicians and caregivers, we were reminded about the significance of dignity and respect for all people, but most especially for those whose lives are drawing to a close. We were reminded, too—most notably by their glaring absence in a few specific instances—about compassion and kindness, and how very important they are to those who are enduring the loss of a loved one.

Henceforth, we will carry these lessons in our hearts as a lasting tribute to my mother and her well lived life. It is our hope that you will do the same.

Sincerely,JanetheWriter

OK, now that you've read it, don't forget to shoot me an email or leave a comment at the bottom of this post about whether or not I should actually send this letter to Dr. It’s-All-About-the-Tumors.

Friday, June 11, 2010

As I continue to walk the mourner’s path, I am comforted by many things: the extraordinary outpouring of affection and care from family and friends, the sage rituals and rhythms of Jewish tradition, and, indeed, by my mother’s own words and wishes.

Earlier today, I went in search of her ethical will to my sister and me, which, as anticipated, I found safely tucked away in a box of keepsakes in my hall closet. Although it includes no date, I would guess, based on context, my mother wrote it sometime in late 1995 or early 1996, and in its words, I found her richest legacy to me:

My dearest children,

For some time now, I’ve wanted to write an ethical will, one in which I could set down my thoughts and values for you. After all, we try to put our financial estate in good order, so how about our ethical estate? I’ve always told you the only thing of value you can leave behind is your good name, so why not talk about that?

At the Kallah last week, I took a class in writing an ethical will, and it impelled me to start what I had been putting off for a long while. You, Jane and David, Amy, and Daddy are the most precious parts of my life and I include you David, because married to our child, you become our child. At your mother’s house after her funeral, Lilac told me that your mother always said she never had to worry about you because “Jane’s family would always look after you,” and she was right. We do so not out of obligation, but because we care about you, you care about Jane and we all care about each other.

So here are my thoughts to which I’ve given lots of thought. They mean a great deal to me and I hope they will to you, as well.

I am the child of immigrants as you are their grandchildren, so the immigrant experience is very important and meaningful to me. I’ve always admired your grandparents for having the courage to leave behind all that was safe and secure to seek the end of a rainbow here in America. Because of them, we are free to be committed Jews as well as whatever else we chose to be, limited only by our own vision of the horizon.

Ellis Island is not just a museum we visit, but a real part of my history and you know how the Statue of Liberty has always been my special lady. It’s vital to know where you came from because it shapes the paths you take to where you’re going. Our Jewish heritage is a treasure and it’s your task to guard it, preserve it and pass it on to your children so the chain of our past will remain unbroken in the future.

I’ve thought a great deal about blessings – the ones I’ve known and the ones I wish for you. I’ve been truly blessed with:

A family that loved me unconditionally;

A husband I love and treasure, who, after 41 years, remains the centerpiece of my life;

Wonderful children whom I would choose to know, even if they weren’t my children;

Friends who enrich my life;

The opportunity to study and grow, not just grow old;

The chance to switch careers and do meaningful work;

The joy of trying to live my life as a serious, committed Jew.

For you, I wish the blessings of:

Sharing your life in harmony with another;

Loving family relationships;

Lifelong learning;

Strength to face what you must face;

A lifetime partnership with God;

Clarity of purpose;

Living a Jewish life within the framework of “Our Obligations”;

The courage to try;

Making choices of your free will that enable you to fulfill God’s will;

A world of peace;

Good health;

Good friends;

Fulfillment in all the times and seasons of your life.

You have grown into beautiful people. As you go through life, you can be sure that I will always be there for you. Know, too, that I will love you until and throughout eternity.

Wednesday, June 2, 2010

Lech L’cha, God said to Abram. “Go forth from your native land to the land that I will show you.”

This parasha was my mother’s favorite, and although I don’t know exactly why, I suspect it was because it spoke to her unlike any other.

Bronx born and raised, she cherished the promise the American dream held for her own parents who, like Abram, went forth from their native lands to places unknown. As a first generation American, she spoke often of her strong ties to the immigrant experience – embodied in her love of the Statue of Liberty and all it represented -- and how “only in America” could such a promise be fulfilled.

Indeed, as she too went forth in the world, she was, like Abraham, a paradigmatic traveler on a spiritual quest. Her journey was deeply rooted in Torah, avodah and deeds of lovingkindness, with huge doses of tzedakah, tikkun olam and her signature smile thrown in for good measure.

But many of you already know all that…

So, I want to tell you some things about my mother that you may not know.

For starters, my mom was a diehard Yankees fan. From the time she learned to use a scorecard as a little girl, she spent lots of time in the House that Ruth built where she knew the game so well that she could have written the rule book herself. She always knew the season’s roster of players, and just a few weeks ago, my parents and I spent time together watching the Yankees take on the Boston Red Sox on the set in her hospital room.

A Hunter High girl, she retained ties to a small group of junior high and high school classmates who, after more than 65 years, still gather regularly to share their lives, their memories and endless delicacies from Zabars.

Upon graduation from Hunter, she went forth to Cornell at a time when girls were required to wear skirts in the dining hall and men – including her own father – could not visit in her dorm room. She remained a proud Cornellian her entire life and treasured always the days she spent far above Cayuga’s waters.

She began her career sitting on the floor singing the intsy-wintsy spider with pre-schoolers before enjoying stints as a newspaper writer, a communications director, a synagogue administrator and, after she retired, a graduate student who earned distinction as the valedictorian of her class.

An avid bridge player, a game she learned in college, my mom was deeply devoted to “the bridge ladies,” as my father always calls them, and the group’s regularly scheduled Monday night game. More recently, Amy and I refreshed my mother’s mah jongg skills -- a game she played as a child -- and last August at a beach house in Point Pleasant, she gleefully cleaned us and a few of our friends out of our spare change and then some.

Staunchly committed to public institutions and civic affairs, she spent many years involved as a leader with both the League of Women Voters and the Franklin Township Public Library. As a longtime president of the library’s board of trustees, she was intimately involved in the construction of the town’s new library building and the beautiful addition that came a few years later.

Although she made her own tallit – not once, but twice – my mother, by her own admission, didn’t have a Martha Stewart bone in her body. When browsing cookbooks, if a recipe had more than five ingredients, or required that you “sift the flour,” she quickly turned the page. And yet, she reveled in the annual seder preparations, in my parents’ yearly Sukkot festivities on the back patio, and always, always, always, in setting the Shabbat table in preparation for a much needed day of rest.

And now, as my mother goes forth to her final rest, she has done so – as she did everything that came before – with grace, with dignity, and with God’s countenance shining brightly upon her.